My diagnosis with Parkinson's Disease in September 2009 at age 80 gave my life a new focus and challenge. Finding ways to meet this challenge helped make 2010 the best year of my life. I hope this blog will be a place where I can connect with others who also are dealing with aging and its afflictions and attractions so that we can share our "experience, strength and hope."

November 15, 2013

"Martin Cruz Smith Reveals a Twist in His Tale"The New York Times broke this story on the eve of the publication last Tuesday of Smith’s newest detective story, Tatiana. Based on its interview with Smith, the Times reported:

Author of the 1981 blockbuster Gorky Park and many acclaimed books since, Mr. Smith writes about people who uncover and keep secrets. But for 18 years, he has had a secret of this own.

In 1995, he received a diagnosis of Parkinson’s disease. But he kept it hidden, not only from the public, but from his publisher and editors.

The article is worth reading in full. But here are some of things that jumped out at me.

Parkinson’s – “The Most Concealed Illness in America”
The quote is part of an online comment to the Times story from a reader who says she has interviewed hundreds of patients with many different diagnoses over the past 27 years. Every man with Parkinson's she interviewed kept the diagnosis secret as long as he could, especially from employers and co-workers.

I was diagnosed after I turned 80. I'd already been retired for 15 years and felt no need to hide the diagnosis. Being open about it -- talking with family and friends, writing about it -- has made it easier for me to live with the disease. Still, I understand why people still employed might choose to keep their diagnosis secret. I also know that keeping secrets make life harder.

To avoid being defined by the disease, Smith began what he called “hiding out within yourself, finding other ways to do things.” For a while, he said, “I was getting away with it. Being a writer, you can hide out more easily. You only have to present an amended version of yourself once or twice a day.”

Tipping Point
About a dozen years and five books ago, “Things started to fall apart.” Research and writing became more difficult. He started taking his wife along on his research trips.

While typing Three Stations, his book before Tatiana, he made lots of typos. The process -- making corrections, fashioning ideas into sentences -- completely wore him out. "It was like trying to catch a fish with your hands,” he said.

That’s a perfect description of the way I feel right now, as I type this post. Smith was able to turn to his wife, who became his fingers. I’m about to turn to “Dragon,” rated the best voice-recognition software.

Unfortunately, I don’t think Dragon and I will work together as well as Smith and his wife. Here’s how the Times reporter described their collaboration:

While he thought, she entertained herself reading back copies of the New Yorker . . . . He spilled out remarkably fluent sentences, then yanked back words and swapped them. Ms. Smith loved entering his fictional world. She’d note if dialogue rang false or scenes seemed thin. She suggested that he write the first draft of a love scene without her in the room.

I don’t expect Dragon to suggest improvements. I also don’t expect to spill out out “remarkably fluent sentences.”

Smith’s Customized Deep Brain Stimulation
After years on standard Parkinson’s medications, Smith recently underwent deep brain stimulation (DBS), which has become accepted treatment for people with Parkinson's when meds become problematic. The surgeon inserts a thin wire into the brain. Electrodes are connected to a stimulator implanted in the chest. The device functions like a cardiac pacemaker -- although it stimulates the brain, not the heart.

Here’s how Smith’s neurologist described his situation:

He was kind of between a rock and a hard place. Lower the medications too much, then you have tremor. But if he took more medication, he developed nausea, low blood pressure and hallucinations.

But DBS can produce cognitive side effects. PD had already slightly affected Smith’s short term and verbal memories. So his neurologist implanted the electrodes in his brain's "globus pallidus," a section thought to cause fewer cognitive issues than another more common implantation area.

The doctors implanted only the left brain, to treat his most affected side -- the right. Implanting both sides would carry a slightly higher risk of cognitive impairment.

Now the “daily torture of the tremor" on the right has largely disappeared, Smith said. The ability to type hasn’t returned, so Ms. Smith is handling that task. He has fewer hallucinations, though they never really troubled him too much. "Having hallucinations for a fiction writer is redundant," he said.

I’m glad Smith “came out” about his Parkinson’s. His story is inspiring -- a man who's had PD for 18 years, living a rich life, continuing to create pleasure for millions of readers.

A Healthline Best!

“John Schappi was diagnosed with Parkinson’s in 2009, at age 80. We love John’s blog because it’s about living life to the fullest — whether that means traveling, going to the ballet, or celebrating the friendships he’s made through Alcoholics Anonymous. He also talks about what products he uses to deal with the side effects of Parkinson’s, such as insomnia, and shares and discusses helpful blog posts and information.” -- Healthline